I died a bit, one year ago

I have had two gigantic events in my life.

Both events were so huge, so scary, so terrifying, so horrifying, so true shit-to-my-heart-and-brain into my soul.
After these two life-changing events, my soul was shivering for a week, or maybe for fifty-two weeks. But…

I am alive, still.
I am here, still.
I am ok, still.

It is ok – now read on…

The first event was 50 years ago

So crazy, everything was changing, completely my life was new, and I had to look at this world for a new aspect. The safe place was all I knew, but this place is now leaving me. Who did she do this to me?? They were squeezing my head, so so hard. It was so cold, the cold air, and really air! Why do I need air? The umbilical cord gave me everything. And the crazy lightโ€ฆ I tried to hold my eyes closed, so closed.

And then I screamedโ€ฆ For the first time, I screamed for all my lungs.
But mom was there. I liked her outside this way too. After some time, that life was pretty ok. I guessโ€ฆ

The second event was one year ago

I was now at an end. I knew it, it’s true from my soul. What happened was really killing me, starting from my brain and said “you’re toast”. That was it. 49 years old, 49 was ok, and I had a quite good life. Ok, now that’s that. So Long, and Thanks for All the Fish! I am done. It hurt my head, the brain really wanted to kill itself, and I fell on the floor and hurt something more. The “I” was now gone.

Someone picked me up again. Picked me alive again. Well, a bit of me was not alive. My new brain has some pieces that are a black void hole. They are gone and dead. Forever.

Remember

I don’t remember anything from the terrifying first time, of course. But I know what happened, and I know why it happened, and I know how it happened. Like this happens to almost everyone else too.

I remember a lot about the second time. How I lost everything from me, and what challenges I have after this day. But I have no idea why. Why why WHY linger with me every day?

Why? How? Now?

I was just unlucky.

A year after

A year is a crazy long time – or only just a fast year.

It feels like a crazy long time to fix my body after my body got shredded apart of… by what? I didn’t crash my car or crash my head when skiing or anything else – why why why did my body get shredded? No idea. My brain was breaking up, but why did I lose my body?

The year feels like a crazy long time, and my body is as bad as after one month.

My brain will of course take a really long time to recover, but it is getting better every day I work. It’s going the right way; I know it is. I know I can think the way I was thinking – almost. I’m going to get there. Sure, my aphasia and my missing energy take time to get back, if I ever will be back as before my stroke.

My Priorities

Since day one after my stroke, I was so sure about my priorities, what is important for my body and soul, and brain. What do I work on this year? Priority is so important to me:

  1. Soul (= be me)
    I really really want to be me, in the soul and in my heart, I want to be me. Why would I become someone else or someone new? Horrifying thought…
  2. Brain (= think, be smart)
    I think, I hope, that my brain is (has been) a good thing for me. I’ve never been good-looking, never fastest, never strongest – so I want to still be a pretty smart guy.
  3. Language (= talk, listen, read, write in Swedish, English)
    It’s a lot easier to talk and to understand. I’m working on it… A lot happened last year, but now it takes longer and longer to actually get better. Keep working…
  4. Foot/leg (= walk relaxed, then run, ski, etc.)
    I want to walk, like walk without thinking about walking. I have to think about walking every time for every day. I want to just walk. That is very important to walk. And damn fun to ski, and good for me and my brain to be able to run. I want to run. I cannot today. I will get there.
  5. Hand/arm (= use everything)
    Live without a working hand? That’s crazy annoying. But I can live, and hopefully my wife will accept it, if that’s happening… But yeah, I want my hand back!

Priority status today

Where am I today? What is my status, in percent? A year ago, I started all these priorities from zero percent. What is it right now?

For each area for my priorities:

  1. 95% Soul – recovery is pretty much done.
  2. 80% Brain – keep active, and sleep well.
  3. 60% Language – continue to talk listen read write – always.
  4. 40% Foot/leg – I’m struggling… I try!
  5. 10% Hand/arm – I hope it doesn’t get lower…

This is what I think, very individual of course. My wife or my colleagues may think something other, and they may have other priorities.

I need control, I need to know what my state is. I need what I was, what I am today, and what I want to be, to be able to work for the mission to fix what I lost a year ago.


So – how did it happen, this last year?

My last year.

Day Zero

2021-02-16 was Day Zero.

Or maybe we should call it Day Crazy.

The night before this day, I got a “small” stroke. It’s called a TIA, transient ischemic attack.

The ambulance picked me up and went to the hospital, to check me out. After a short time tonight, it was feeling better, and I could speak properly again. But a crazy headache…

In the afternoon it was quite ok. I joined a chat with my colleagues for a “fika”. It was strange, but I was ok.

Then it happened.

While I had my son Lukas on the phone, it hit me. Suddenly he could not understand me anymore.

I fell. On the floor. Head down. I couldn’t get up. Tried a few times. Nothing.

Nothing happened. Everything is black.

I said So Long, and Thanks You for the Fish. Bye bye.

Close to dead.

Same evening

They sent me to Hospital Karolinska Universtetssjukhus to fix me. There they have the best doctors in Sweden (and the world?).

They started from my right groin, the catheter was joining my vessels, and go up, up, up… up through my body, all the way up to my poor dying brain.

Doctor hero doing his work.

This is called a Thrombectomy. They’re awesome ๐Ÿ˜Ž these doctors! ๐Ÿ‘จโ€โš•๏ธ

Now my brain looks a lot better!

Last, they left a few Stents in me, to make sure I will never ever get this stroke again…


First 2 days

No idea. I was at Hospital Karolinska Universtetssjukhus and they took care of me.

I survived. That’s all. I have no memories from this time. It’s gone.

I think (I hope!) I thanked all the docs. It was not too easy to fix on me. Good job you guys!

My life was black and void.

First 2 weeks

That’s my easiest life ever.

I was alive, and that’s it. And I guess that was good.

My body wasn’t working, my brain didn’t work well either, but I lived. As good as I could.

I never had to “do” anything. No responsibility, no decisions to make – everyone took care of me. I was actually happy…

I was at the Neurology Ward 73 in Danderyds Sjukhus, where they have patients with acute stroke and early treatment after stroke.

Were you John? The guy that was my nurse at the Neurology at Danderyds Sjukhus. I don’t remember names… too bad. Maybe he was John. He was a good nurse; he was good for me. He wasn’t too hard with all “rules”, so he went out with me to the area by the lifts in the evenings, and we started to walk there. One lap, two laps, three laps… and so on. Maybe 10 minutes, then my energy was out. I “talked” about my son, who is a professional in e-sport, and he had heard about him.

I hope he did understand me. Who knows, anyway… At this point in my new life, I could hardly get a single word in the way it should. Aphasia and a just newborn brain were really difficult to get the sounds right.

My first try to write.
21 February I met my wife, for a short hour… ๐Ÿ’–

This is the first time I really hate the Covid-19. I got to see my wife Linda a few times in all the time I was at hospitals, and only short times, and not in my room but instead outside the lifts.

Naturally, I missed her. She misses me. We missed each other.

For a few days, my wedding ring was lost. Where was it lost? Must have been some doctor or nurse that had to take it off, and then they lost it somewhere… Well well, I want Linda and she is in my heart, the ring is not really important. But it’s good to have “her ring” on my finger, now that I can’t have her close.

22 February I finally found my ring – in my pants pocket in a bag, in the wardrobe!

Yes, this is silly, I know. But after I finally found it, this unimportant silly little metal thingy – I started to cry like floods. Thank you, mr/ms Nurse!


Week 3-5

I started to work. With me myself and I.

I moved on to Rehabilitation Ward 84 for patients with brain injuries. That’s me! Still really crazy… Will I ever understand and accept this??

Everyone here cared for me. They fix my bed, they serve breakfast, lunch, dinner, and a few “fika” every day, and they make sure I take my medicine.

Eat your breakfast!

And I started my rehab, to get me somewhere back to who I was. I met my speech therapist (“logoped”) and my occupational therapist (“arbetsterapeut”) and my physiotherapist and psychologist and so on so on…

I don’t really know what all the others do for me, but I know Malin, the speech therapist. During these weeks she got me to start to understand the Swedish language again. And why do I have the problem, what should I work on.

“Can you say what is on these pictures?”
No, I couldn’t…
If I could say it, then I’d say “I will, sometime – I will!”

I work with Malin.

When I worked on myself, I was training and testing new things, and trying to play with balls… I mean, with balls it is always better.

Ball in my hands.

Week 6-7

I got home. I could hug my wife, Linda. I could hug my sons and my daughter and my bonus kids. That was the best. Being close to Linda, talking-ish, watching TV, going on small walks, hugging her is never too much.

Linda picked me up to go home.

And we started to know each other again. Well, that was easy. Jonas is still Jonas. We had missed each other, but we love each other still, and she knows me, even if I looked a bit different. But I’m still me.

Now I can relax for a week or two, to really start to work with myself to get better ๐Ÿ“ˆ

I did a few things in our garden. Install water pipes in the greenhouse we just had built before winter. I started and finished putting stones for a walking path in our grass, and shuffled a few tons of soil. And so on…

I was very tired and very “uncontrolled”, but I did what I could.

Working at home. See my right hand…

April-June

This is when my “rehab” started.

Every weekday I walked to the bus, took the bus to Danderyds Sjukhus hospital, and went to Brain injury rehabilitation daycare.

The time at rehab (totally 12 April until 16 September) was good and positive for me. Some things had a pleasant atmosphere and made me learn new things, some things were funny (but I didn’t really find why we did it, sometimes).

Most importantly, I met Mi, my speech therapist, who taught me to speak. Well, to speak a bit… But she poked in the right place of my brain, to get it to go in the right direction.

In June I did a super small “speech” for both Mi and Malin. I read the book Alchemist by Paolo Coelho. I had only read about 20 pages, so I “shoot from the hip” during my talk. Talking from my heart. But I was prepared too, and I was good with what I did. I think.

That’s a moment, in my new life. See my video about the speech from the 4th of July.

Talking about Mi, Malin, and myself.

I’m starting to worry.

Why is that? Seems like stupid to be worrying…

Worrying about getting a new stroke. Yes, that is mainly my problem. During my first 49 years, I never worried about getting a stroke, or anything else. Now I do it every day. I am not dumb, but I still worry, probably every day, and still like that. Maybe a bit less often, I hope. But why? Isn’t my new life hard enough the way it is, I don’t need to worry too…

In early May, I really found something wrong in my head. Rather in my vessels, taking my blood up to my brain. It just felt wrong. It’s bad. Will the blood go crazy and get a new stroke? The doctor was listening to me, took it seriously, and send me to an X-ray.

Well, that takes time… So they sent me back to Ward #73 again… I signed in there, they found me a room, they served me dinner… #backtolasttime I hate it and hate it and hate it, but I need them to check me up.

I met the same guy (John?) there. He was glad I was so much better at speaking, and so was I.

After the x-ray, they said I’m all good, and I’m going home. Then I just wanted to go home again. Now now now. Very very very glad to not have spent the night there…

I said to John “Hope I’ll never see you again!”. He changed it to “Let’s see you in a bar.”. Ok, that’s fine ๐Ÿ™‚

As soon as possible – I did this.

This spring and summer, I liked to record my “talks”. Talking about what has happened to me, and how to handle it all. And I did it in the early days of my aphasia


July-August

My summer was going to be a promise – I shall train train train with my body.

That did not happen. ๐Ÿ˜”

During the summer, I was losing my body. The things in my body started to break up, piece after piece.

I fell on my bike while almost standing still. It was a small, silly accident. So small so it didn’t even feel like unnecessary. Then a really small, silly, problem got to my shoulder, to my arm, to my hand.

My hand is getting worse and worse.

So training was hard to continue.

I was having a vacation, was going “up” for my body – and I went down…

I even got a lot of “dizzy”, and a bit harder to keep my balance. Why did I get that? Or did I not? Maybe I just have a bad feeling this time… And then I could feel a lot of different things I was feeling… Maybe I got dizzy, or I just thought it…

Anyway – this was a bad time. Move on, please…


September

At the end of August and half of September, I had my last weeks with the rehab at Danderyds hospital.

F*ck with my body – my brain is important!

Preparing for my session in Southampton, England.

I was preparing for my session (actually started in July). What do I talk about? Me, of course, since I don’t know any techy stuff right now… Before my stroke, I loved to talk techy, and I will, one day…

So I work on my last things at rehab, and I use all other’s times to prepare my session at South Coast Summit in England, called “My journey back to life after the stroke“. This will be a huge thing for me. Go back on a plane, back to England, meet so many of my friends, and go back up on stage…

During my last day at rehab, I did a “dress rehearsal” before going to England. I think they liked it ๐Ÿ˜‰


October

I and Linda went to England. Meet my friends. It’s really hard to speak to them… No, it works, but it takes a lot of energy. Have to think think think all the time. Every sentence, every word I say, and all I listened to was even harder to think, all the time. Before, it was just fun and great to join them all.

Today, it was hard, but I truly loved to meet them all.

Will, Chris, and I.

I did get on the stage. I did my session. They listened, for almost a whole hour.

And I’m so extremely crazy proud.

England was not all of October…

My main focus was I work to fix my hand, at a “Constraint-Induced therapy“.

My feelings were getting bad, sad, depressed. Again. Everything in my body was feeling that I lose one thing after the other. First and most – my right hand was now dying.

During the CI therapist, with total focus on my hand and arm, I was drifting my hand. I was there for 5 weeks, 5 days a week, 3 hours every day.

My “teacher” was like the best in Sweden (and more) to get our hands better for all of us stroke recoveries. She still has no idea why this has happened, or what started it. When I showed her a video of me throwing a ball during my training at home last spring, she lost the words.

Why??

Throwing a tennis ball, May 16, 2021.

This month I asked Linda a few times (and a bit more) if you could “please make me breakfast” and get it to me still in bed. Some days I could hardly ever get up from my bed.

Of course, I did get up, every day. But it was hard for me these times. Too…

Struggling a war against my hand.

As I said at my session in England, I said I’m now in a war against my body.


November-December

Starting the winter is nicer than only the autumn.

Now I focused 100% on my leg and foot. On the right side, of course… Left is good and nice ๐Ÿ˜Š

November and half December I am at a CI therapist, working daily for three hours, and there are a few small small improvements! Ok, I mean really small good changes.

It’s the first good news in… forever? No, but first until it started to go sideways and downwards this summer.

Small small steps for my leg.

I tried to get as much as possible to go to the gym. I continue to workout my right arm. I have to. It’s not fun, I don’t see any improvements, but I have to.

I have to I have to I have to I will do I will do I will do…

I was also still going to my new speech therapist, I meet her about two times every week. We do not really have “a mission”, but more generally getting me a bit better at both talking and listening, reading books, both quiet, and reading out. She is working in a place close to my work office, see I guess we’ll see each other many times for many years…


January

Now it is 2022, and I am still Jonas. And I still have the same love and the same goal and the same problems.

I hope it will get better. I hope there will be a breakthrough. Breakthrough of something, whatever, but something…

Looking forward to this new year.

I continue with my workout. Going to the rehab place where I have done CI therapists, and get back a few times every week. It helps me to get out and keep training and keep focused. After being there, I always go to the gym. After one hour or one and a half, my wife or my daughter picked me up to go back home. If they are at work/school, I walk the 3 kilometers back home.

From mid of January, I started to go to school. A school?? Yep.

This class is 100% about Aphasia, try to help us to get better. The school is for three years… which feels crazy. They put me in a group where most are there the last semester after three years. I guess that is a good thing? They put us in groups based on what we can.

We’ll see how long I will be there.


February

Now this is One Year.

16’th of February. Oh wow. Damn. Memories… Or not.

What has happened, now in February? I still don’t believe what I read, but when reading back in this documentation of this year, I see what I have done, I see I am better than before, I see I am also getting worse in a few areas.

And I see how long time I still have to work a lot more… I’m not done.

During February I also work out. I go to the gym as often as I can, as I have the energy. I do have time.

I work with my arm. Everything I can, but it’s not much.

And I work with my legs. I try to find how I use my legs, where I do wrong, what I need to focus on…

I love to be here in the afternoon. Not many people here, so the big classroom is usually empty. I can be in there, walk around and try to jog a bit, for 20 minutes, 30, and 40…

I love these mirrors. Big ass mirrors. I need to see everything, all the small moves, see all details of my misses, and see what I do right.

Small steps. Small steps. I love these mirrors – so I can see all strangers’ legs.

Compare this from February to what I did in May last year…

Training, 16 May 2021.

Not too much different, but a bit better back in May. Too bad.

But it is great to have these memories and the videos.

I like to see myself, not that I like to “see me”, but to see all details of my bad walking.


I’m a positive guy

I’m happy

I have so many good things. Brain works. Some problems, but still!

All I can do is to continue, to get better, to do more, to keep the fight!

What else is there?

I’m scared

Why am I scared? Why am I afraid of losing my body or brain?

During my first 49 years, I had never been scared of my body or my brain. I just was relaxed, thinking just “If it works, then it’s good. If not, well that’s that. So what?“. At one year my back was hurting me, another year my neck was a big problem, some other years I had other issues… But nothing was really serious.

Now that I know that a stroke can be serious. I thought it was a binary; either you live, or you get a stroke and you die. And I am now working myself to get back to normal-ish. I’m working my ass off to get me back.

Getting a setback, making me one year back, or even a small tiny setback – that scares the shit out of me.

I want the be the one I was, being happy, only happy. “If it works, it works!“, and that’s that.

I was like this only-happy until this last spring. When I was getting sober after my stroke, I knew the danger and was scared for my body, soul, and brain to lose it.

I am now a new version of my soul.
A bit more fragile in my soul.

But I am a positive guy!


My Future

What am I looking for in the near future?

I don’t think about the long term – for the long term, I will just be me like always. So I am only looking at the near term.

My near-term future and my focuses:

  • Work
    I hope ๐Ÿ™ to start working, I mean work for real, at my office and so.
    Maybe sometime this spring. Only like max 25%.
  • Sessions
    You know, I like to speak at sessions. It’s positive for me. I have to prepare it properly to deliver a good presenting. I work on talking in a good way, I work on the slides, I work on demos, and I love to add the sparkles…
    My brain needs this.
  • Every day training
    Not every day to the gym, but I always being aware of my body. Doing small things, try try try to use my right hand, walk in the correct way. Think think think of the body.
    And go to the gym.
  • Running
    Ok, I will not be “running”, but I am going small steps to be closer to running.
    I will continue to move my body and look in the mirrors.

Thank You ๐Ÿ™

Thank you for this first year in my New Life.

My wife Linda is literally my savior and my love. You support me in everything, and you fix all daily-to-daily days, at home, in the kitchen, at work – doing everything I and everyone else need. Thank you for me being alive today ๐Ÿ™

My daughter Cassiopeia. She is at home with us, and she has a good balance to be here and care for me, and being at her mom now and then to give me space to focus totally on myself. She just got a driver’s license is also great – to pick me up at the gym when I’m too tired to walk home.

I have three sons too, Rasmus, Lukas, and Love. They have moved already, so I speak to them now and then, they wonder how I am doing it. I trust them. I also have my “bonus kids”; Linda’s children Sofie and Simon – they care about me, they worry about me, and I get to hug them now and then.

My parents Gunilla and Anders. We talk about every week. From the beginning, it was harder, but now they are happy to see how I’m going forward, and they know I’m going to be ok. Parents are parents, and during tough times you can always trust them. I can at least.

My boss Kathrine and all my colleagues and friends at CRMK. I haven’t worked for a year, but they want me back, back in the office, just to see me. They have busy days, but they put some time to see me. I know they care for me. All of them, and I too, want me to come Back for Business!


Jonas Rapp
2022-02-16


3 thoughts on “I died a bit, one year ago

  1. Thanks Jonas for sharing this. One can feel all the challenges and struggle that you have gone through. I was so excited with the thought of meeting you and working along with you – things changed after that. But I am happy that I got a chance to meet you personally. You were a inspiration than now that inspiration and respect for you has grown thousandfold. My regards to your wife, children and parents who have been there as your strong support. Wishing you a speedy recovery and more and more blissful and fulfilling days ahead.

    1. Thanks Nishant, I’m glad you follow me through my journey ๐Ÿ™
      And yes – it was great to meet you when I worked a bit in Dubai!!

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